So the first two months of school have passed by, we have enjoyed the half term holidays and are now on the countdown to Christmas! (Too early?!) So this is a catch up post as to how things have been going as there have been a few wee changes to Lucia’s routine since September.

Being a big P3 girl now means that on a Monday and Tuesday she stays in school an extra hour and ten minutes compared with the rest of the week, so as you can imagine I worried about how this extra time would effect her. We also introduced a half hour swimming lesson each week. The usual things went through my head – how will this effect her energy levels? Will she be able to cope? How will it effect her swelling? When she is tired her body struggles to cope – would these few changes be manageable? Will the extra few hours at school make her body more sluggish or her swelling increase? Will she be able to cope with the extra work if she is tired? Is adding on a swimming lesson too much? Or will she adjust and be just fine?

I tried to rein all of these thoughts back until I was faced with the facts – until she actually started into the new schedule and just waited to see how she would cope. And she has been doing so well. She is still adjusting to the changes and we have had to take things day by day, make decisions to manage her energy levels and ensure that she doesn’t overdo it, but still gets to enjoy school, dancing and swimming as much as possible.

New routines

The first day back to school completely floored her. She had a great day, loved seeing her friends, her new classroom and being ‘the big girl’ staying later, but my goodness was she tired. By the end of the week she was completely shattered, but even though she was tired she had a great week and settled in well to school.

To counteract this we tried to ensure earlier bedtimes and plenty of rest, elevation and quiet time. That first week she also skipped her swimming lesson as she just didn’t have the energy – and it is vital that we do not push her to do things when she simply can’t physically manage it.

Flexibility with Lucia is really important. I have mentioned in previous posts that when she is tired in this way, things just have to stop. Whereas with Max we could probably let him rest up for a bit and then send him on to football training for example, this just isn’t the way for Lucia. So we are always mindful that it’s not just regular ‘tiredness’. When your body is struggling to work on a daily basis as it is – in her case her lymphatics – everything else on top of that just exacerbates this fatigue and she shows this both physically and mentally at times.

So over the last few months she has missed swimming a couple of times, she has skipped dancing a couple of times and there has been one evening when she was too tired to complete her homework, so we just left it.

Lucia’s teacher is very understanding and her assistant in class is as fabulous as always and gives her such great care, meaning we know in school she is well looked after. They have such a brilliant relationship and Lucia will always tell her how she is feeling. Somedays she will ask to stay in during break time rather than head to the playground if she doesn’t quite feel up to it.

Interestingly, at our recent parent-teacher meeting, Lucia’s teacher commented that she noticed Lucia would sometimes leave out pieces of her work at times or not fully finish something – not regularly but the odd time. And she said she knew it wasn’t because she couldn’t do it or that she just couldn’t be bothered, so she didn’t feel right to push her on it. She asked would this make sense to us? Which of course it did and I explained how her lymphoedema can affect Lucia both mentally and physically, that she does sometimes reach a point when her wee brain just can’t think due to fatigue. So now we know her teacher is always looking out for that which is so reassuring.

The ‘episodes’

I have mentioned these ‘episodes’ before here (I don’t really know what to call them?) and we have had three of them since September. On the Friday night after her first week back at school Lucia suddenly felt sick, had terrible nausea, her heart was racing and her legs were ‘wobbly’, so wobbly she couldn’t stand on them. So she lay on me on the bathroom floor for a while until the nausea mostly passed and she was able to settle in bed. That weekend we did nothing and just let her rest and recover as they do take quite a lot out of her. We assume this one happened due to the excitement and adjusting to the routine of the first week back at school.

Then last week she had another one on Tuesday evening and a mini version on Thursday morning when she woke up. So we kept her off school on Thursday and Friday for total rest and lots of cuddles to try and help her body and energy levels get back to normal. This was her first week back to school after half term so again we think they happened for the same reason – but in all honesty, who knows? This is just our guess.

Hoping we are doing the right thing

Reading back on this I realise it may sound like she has been struggling the last few months but she actually is coping really well – as long as we ensure that we manage her daily life for her so that most of the time, she can do all of the things she loves to do. But we do just have to take things as they come on a daily basis and make the call each day as to what we think is the right thing.

I do fret about her overdoing it and if we were right to add the swimming into the mix when there was also a change at school. But we have introduced outside activites very slowly with her.

Two years ago she took on one hour of ballet a week. Last year she added another hour of dancing midweek. Then this year a half hour swimming lesson. And we would really love her to be able to keep at the swimming because the benefits for her Lymphoedema are fantastic. But we will always continue to weigh everything up.

Overall Lucia is a happy girl. She loves school, enjoys her work and playing with her friends. Ballet and dance is still her first love and she also adores swimming. She is confident in herself and her abilities and continues to talk about her lymphoedema, always asking questions or just general chat and all in the most positive of ways. So we will keep on doing what we are doing, being mindful and taking it one day at a time as always.

I always seem to start these posts with ‘it’s been a while’ – and it really has! Two months since the last post but we were just enjoying the summer holidays, the no routine and the time to just do what we wanted, when we wanted. And it was absolutely wonderful.

Summer time for us is very much a mixture of fun days out and relaxing ‘home days’ playing games and just chilling out together. I work a three day week – Monday to Wednesday – but throughout the summer I took quite a few Wednesdays off to make the most of the time with Max and Lucia. Daryn also took off days here and there, and the days we were both in the office, nana and grampy stepped in.

We know we are so fortunate to have my parents close by and able to look after our two little people and believe me – they get spoilt rotten! They enjoyed trips to the park, the cinema, the planetarium as well as days at home playing in the the garden and getting slightly competitive over junior monopoly! (Thanks mum and dad!)

At the theatre with nana and grampy

I think we definitely found that both Max and Lucia appreciated the holidays more this year, probably because they are a wee bit older (9 and 6). So they enjoyed the break from school, homework, football, swimming, dancing and everything else that goes on. They loved lazing around in the morning, staying in their pjs all day, getting all their toys out and just relaxing. And so did I!

At the beginning of the summer we all sat down and made a list of some of the places we would like to go and the list was pretty long! So we picked the top few things as priorities and tried to plan them in. As I said before those relaxing home days are pretty important and featured highly in our holidays.

The main reason for this was to ensure Lucia had plenty of rest in between days out as if she overdoes it, her swelling suffers, her energy levels plummet and she can be a very emotional (and grumpy!) little girl as her body tries to recover.

For example, Dublin Zoo was top of our list and we left the house at 8am to get the train and didn’t return home until 9pm. So the two days before we went to the zoo we had quiet home days and the two days after the same. We knew she would need to be well rested to take on a long day and would need proper recover time in the days that followed. (We all did!)

It was definitely a highlight for us all – the train journey, the zoo, the reptiles, eating dinner out and getting all sleepy on the train on the way home! I had brought cosy leggings and fleecy socks for Lucia so I could take her compression garments off for the home journey, as by then she had been in her compression for about 11 hours and was desperate to get them off. She then elevated her legs on me for the 90 minute train ride. We also brought the buggy to the zoo as we knew we would be walking for miles and Lucia’s legs do tire – and we can’t piggy back her for too long anymore!

Lovely giraffes!

Three extra rhinos in the zoo!

So busy days out essentially need planned around quiet days before and after, and this helps us to maintain Lucia’s condition.

We also visited numerous parks, climbed a mountain (couldn’t use the buggy here so the piggy back had to happen on the way down!), headed to the beach, went crab fishing and watched plenty of movies, played lots of board games and made slime in between!

We also spent a wonderful week in our most favourite place thanks to my friend’s parents who very kindly let us use their caravan again this year and spent most days (rain and wind included!) on the beach. Once again it was just wonderful to see Lucia able to play on the sand in bare feet and legs along with Max – something that most people just take for granted. Our hearts still leap when we see her reaction as she feels the sand between her toes, as those wee toes are always confined to her compression garments. She lies down and makes sand angels, rolls around and just squeals with joy! Along with Max, they ran in and out of the freezing water, jumped waves together, built sandcastles, buried their feet in the sand and climbed sand dunes. Pure freedom.

The joy of bare feet

This is a beach with the softest, cleanest sand, so very safe for Lucia to have bare feet and legs – but we are still vigilant for any dried up sea weed or stray pieces of shell, and Lucia is brilliant at keeping herself right. We also head straight back to the caravan (two minutes away) and put her into the shower and thoroughly wash her legs and feet before deeply moisturising her.

We also relaxed the compression garments a little during the holidays and on some of the days when we weren’t leaving the house we gave her a day off. Those days were spent elevating or sitting down so gravity wasn’t playing its usual part in her swelling.

Finally, Lucia also had some bandaging treatment carried out at her own request and managed 72 hours all wrapped up. We had the usual side effects including low energy and loss of appetite, but the beauty of doing it during the summer meant she had plenty of time to recover. Amazing girl!

When your big brother plays your favourite Frozen game because you are being so brave with your bandages!

So now September has well and truly kicked in, the dreaded routine is back, school is in full swing and we are just getting to grips with everything again. Next post will be how we are coping as we ease back into life in the fast lane!

What the title of this post says is exactly what has been happening more and more in our house lately – talking about Lymphoedema. Obviously it has always been in the conversation on a daily basis over the years as it plays such a huge part of our everyday lives – but the difference now is that Lucia initiates a lot of these conversations.

As Lucia was born with this condition and we have been carrying out her treatment since she was just a few months old, she only knows life with Lymphoedema in it. Her everyday includes therapy, compression, skin care, elevation, exercise and vigilance when she is outside playing – all of which is completely normal to her.

We have also spent quite a bit of time with Max over the years explaining the condition to him, how it affects Lucia, reading ‘The Big Book of Lymphoedema’ to him and involving him in her treatment so he has some understanding of the condition and to ensure he feels included in everything.

Explaining Lymphoedema

We have always talked to Lucia about her Lymphoedema and she has been able to say ‘I have Lymphoedema’ since she was just two years old. (I know many adults who struggle with the word!) We have always explained it to her in as simple terms as possible to try and build an understanding with her – and that is tough because I find it hard to explain to adults never mind simplifying it for the children.

But over the last few months she has been bringing it up more and more of her own accord. We can see her little brain ticking over as she tries to understand the condition that she has, trying to figure out what is going on inside her little body, why she has to wear tights all the time (which is tough on warm, sunny days) – and how we answer her now is so important for her mindset and for her confidence going forward. To be honest, I do find it pretty hard as I am always worried that I won’t explain things properly, in a way for her to understand and in a positive way that doesn’t make her feel like this is something negative, but instead makes her feel determined that she can still do anything she wants to do. Then I overthink about what I have said to her and wonder could I have said it better, was my wording ok, should I have said this instead…

Positive and negative

It’s also so important to remember that how we see her condition as adults, isn’t how Lucia sees it. We know it is a rotten condition to have. It can make us sad and scared because it is chronic, incurable and progressive. We worry when swelling fluctuates. We fear infection. We wish she didn’t have to wear compression tights everyday. I could list one million other negative things but I won’t as we do not dwell on these factors often. Instead, we focus on the positive for Lucia as everyday we tell her she can do anything she wants.

She doesn’t feel any of the above. She doesn’t see her Lymphoedema as something negative at all. In fact, in her own words she ‘likes’ her Lymphoedema because it is ‘part of me’. So when she says things like this I feel like we must be doing an ok job with things.

But anyway, I thought I would note down some snippets of the conversations we have been having over the last little while to show how her little brain has been working and how we have been trying to explain things to her.

Fluid

Lucia: What is the fluid?

Me: The fluid is like water and it gets stuck in your leg because the little tubes don’t work properly to move it around your body.

Lucia: So it’s like there is a bar across my leg and when the water tries to get out it bangs off it and can’t move?

Me: Yes, so we use the machine to try and help some of it escape. Then it sneaks out and shouts hooray! But then it comes back, falls down and gets stuck again and then we have to help it escape again. That’s why we do it everyday.

Lucia: And that’s why we do elevation too. I don’t think any of my friends would know what elevation is but I do! What colour is it – is it white?

Me: No, it is clear like water.

Lucia: Wow.

Me: And how else do you get this fluid to escape?

Lucia: By dancing! And walking and running and bouncing on my mini-tramploine.

I like my Lymphoedema

Lucia: Will my lymphoedema go away when I grow up?

Me: We don’t know sweetheart. Maybe or maybe not.

Lucia: What? I don’t want it to go away – I like it!

Me: What do you like about it?

Lucia: I’m not sure.

Me: Do you like wearing your tights?

Lucia: Not really

Me: Do you like your machine?

Lucia: Yes I love it.

Me: Do you like getting your moisturising cream on?

Lucia: Yes, it feels nice. And I like bouncing on my mini trampoline.

Squishy foot

Lucia: Mummy, my left foot is all skinny and bony and my right foot is all squishy and soft. I love it! (As she sits poking her foot!)

Me: That’s right, and do you know why?

Lucia: Because that’s my lymphoedema foot.

Me: Yes, that’s right. And that’s why it is sometimes harder to get your shoe on this wee foot and it can be a tight squeeze.

Lucia: Oh yes! I know that! And sometimes it’s not very comfy. I can see this foot and leg are bigger than my other one too.

Me: That’s right sweetheart – they are a wee bit bigger but both legs are super strong and let you do anything you want.

Lucia: Like dancing!

School

At school her friends seem to be also showing more of an interest (probably due to the warm, sunny days) and asking her why does she have to wear tights all the time. Her answer is: ‘Because I have Lymphoedema and they help me.’ Simple!

Negativity

Lucia has only had one negative comment so far and it was from a girl in school who told her she didn’t like her tights. My heart felt like it smashed into a thousand pieces as I asked her what did you say. And her response was epic

Lucia: I said to her, why do you not like my compression tights? They aren’t just tights. They are a part of me. They help me. It’s like they are one of my body parts, I need them.

Me: Good girl! That’s exactly right! And how did this make you feel?

Lucia: I felt cross!

Lucia could not have handled this situation any better. Her response was amazing and the pride I felt as she told me her side of the conversation was unreal. Right now her lymphoedema is very much a part of her – part of her identity and a part she is protective of. I know this feeling might not last as she gets older but it is a good foundation and very much the way we have been trying to teach her about this condition. Our strong girl.

Protective big brother

Max also heard this particular conversation and said the girl wasn’t very nice who said it, but he was so proud of Lucia’s reaction. He is a very protective big brother and we know, even though he is only 9, that he understands a lot about her condition and will always be there for her.

As I said earlier on in the post, it has always been hugely important that Max is part of Lucia’s ‘Lymphoedema Life’ – whether that means being with us watching Netflix while we do her treatment, attending therapist appointments with us or getting cushions to elevate Lucia’s legs, he is just as much a part of everything as us. Although they have times where they drive each other (and me!) mad by fighting, they are very close and we hope always will be as they grow up together.

So we will keep talking about Lymphoedema as much as we can. And enjoying our summer too!!

When the sun shines in Northern Ireland there is no place in the world like it – and for the last week and more we have been having the most glorious weather with blue skies, sun shining, fluffy white clouds, balmy evenings…proper summer weather which we don’t often get!

And as beautiful as it is and as much as we all enjoy it, it does bring some difficulties too when it comes to Lucia’s Lymphoedema. Physically we have noticed her right foot in particular has been a lot more swollen with the heat and by the end of the day her ankle and leg are also carrying more fluid and even feels heavier to the touch. Thankfully she doesn’t feel any pain with the extra swelling but her energy levels and resilience are definitely a bit lower as her body tries to cope.

I have been really focussing her treatment on her foot and ankle to try and get this fluid moving so we have had longer sessions with the Physio Touch machine, which can also impact on her energy levels. We have also tried to get her to drink more water to keep her well hydrated (my mum manages this with her much better than me!).

And the knock on effect of her foot and ankle being more swollen means her footwear is tough to get on in the morning and then uncomfortable until her little foot adjusts.

So as you can imagine this has been quite tough to manage physically and mentally as it is always a worry when her swelling increases. Although at least on this occasion we know why, as much of the time when her swelling increases we have no idea of the cause.

Compression and heat

Also very much on my mind is the fact that Lucia has to wear her compression garments during this heat and how that makes her feel. Imagine having to get squeezed into a pair of very tight, thick and heavy tights while the temperature outside soars. Imagine being six years old and already being warm and sweaty before even getting these on. It’s absolutely rotten and just so so unfair that she has to endure this.

And, as she is getting older and understanding things more and more we are having to reason with her a bit more, explain to her more and compromise with her more.

Heart break

On the second day of the lovely weather I was getting her ready for school and she asked if she could wear socks like all the other girls because it was too warm for her tights. My heart did break a little bit in that moment as I tried to think of the best way to answer this question.

So I said something along the lines of – I know it can be warm wearing your tights but we have to always remember the important job they do. And then I asked her to explain to me why she needs them. She answered with, because I have Lymphoedema and they help me – amazing.

But on that day she just wanted to be like everyone else and asked over and over again to please wear socks – just for one day and she would wear her tights the next day. ‘Please, please, please, please, please mummy. Just to be like my friends.’

I wanted nothing more than to say, ok sweetheart…just for today as I held back the tears. But of course I couldn’t. She needs her compression even more in the heat to try and maintain her swelling. And what happened if she fell in the playground and cut herself?

I held her close and again reminded her of how important her compression tights are – and as a compromise agreed that we would take them off a little earlier than normal later in the day so she could enjoy some bare leg time in the sunshine.

There have been a few other moments like this recently as her little mind is just ticking things over – so myself and Daryn have just tried to be gentle with her, allowed her to feel these emotions, listened to her, explained things to her and just tried to understand how she is feeling. Which, in all honesty is so hard, because the reality is we don’t know how she is feeling.

However, these moments have came and went. Lucia has expressed her feelings and then been amazing by accepting some compromise and then just getting on with things. Her strength and resilience still astounds us when we go through periods like this. I am totally aware that these sorts of feelings will more than likely become more frequent and more difficult to manage as she gets older, so all we can do is just to find the best way to deal with the situations as they arise and to try and help her feel in control as much as possible. Like we are at the minute.

Mummy emotions

I, on the other hand, have a churning stomach and my heart hurts for her. I feel like I think about the unfairness constantly at the minute.

I know it might not seem like that big a deal to some – but to her, to me and to us it really is at times. I want her to be able to wear socks and enjoy bare legs like her friends. I don’t want her feeling frustrated by her tights when the weather is warm – to feel constricted and different. It’s just not fair.

And last week as I put on a skirt with bare legs and sandals for the first time this year I stopped and could have cried. Why should I get to have bare legs and feet on a sunny day when Lucia can’t? How is that fair? Why am I allowed to stay cool while she has to sweat? I didn’t even want to go downstairs for her to see me because I felt so guilty.

I also feel it when I grab Max a pair of shorts and tshirt to wear in one hand while my other hand grabs Lucia a summer dress but paired with a pair of thick tights. It’s not fair.

I see other children at school or in the park enjoying bare legs and feet in the sunshine – a basic right really. Something so small but taken so much for granted and I think how lucky they are and how it’s not fair.

It’s not fair

In case you hadn’t noticed I have said ‘it’s not fair’ approximately 43 times! But I do try not to dwell on it too much or for too long. Thankfully life is so crazy busy that it doesn’t really let me. It will always be in my head and some days it lingers longer than others – but I do try to shake it off. Because this is how I am feeling. Me. Not Lucia (most of the time). She has her moments which are completely understandable – but right now she is finding a way of getting through these moments with our help and getting on with things, so I have to try as well. But I am her mummy so I also have to allow myself to feel this way, but not let it take over.

So we have made the most of the weather through compromise. Tights on a wee bit later at the weekend and off a wee bit earlier later that day. Extra treatment. Plenty of elevation. Hydration. And lots of fun in the garden with Max playing football, splashing in the paddling pool, running, jumping, dancing and squealing with laughter. Because that is what we do best.

Last Saturday was an amazing day. Lucia and her dance troupe took part in another festival (click here for details on the last one) and she was so excited! She woke early (especially for a Saturday) and just couldn’t wait to get to the venue, to see her friends, get her costume on and to dance on stage. Now that she had experienced it once before and knew what to expect she was raring to go – this time with absolutely no nerves at all!

She danced beautifully along with the rest of the group, full of confidence, smiles and grace – and they won! As you can imagine we were all beaming seeing her up there on stage, playing her part and doing her thing – just like all the other girls – and, most importantly, absolutely loving it. The gold medal was the icing on the cake!

Showing her gold medal with pride!

As mentioned in the last post, we allow Lucia to do the routine in her bare legs (without compression) as it is only for a short period. She does however wear her ballet shoes to protect her feet while all the other girls are in bare feet.

But Saturday taught me a very valuable lesson. I think I took my eye off the ‘Lymphoedema ball’ and Lucia paid for it on Sunday.

Details about the day

The show was at 2pm. We arrived at noon as the teacher wanted to do a few practice runs on the stage with the group as they are all aged seven and under (babies!). I kept Lucia’s compression garments on for the practice and then everyone started to get ready. The changing area in this particular venue was tiny – and when you had over 20 girls and their mums all trying to get changed, make up sorted and bags sitting everywhere, there wasn’t even elbow room.

I managed to find a chair and a little bit of space for a few minutes to get Lucia’s compression tights hauled off her, as unless she is either sitting back or lying down there is no other way I can get them off. I then quickly got her changed into her costume as I didn’t want to be taking up too much room for too long.

In hindsight, I took the garments off too early – they could have stayed on at least another 15 to 20 minutes, but because everyone else was ready I didn’t want to be rushing Lucia at the last minute – plus, anyone with experience of compression garments knows there is absolutely no chance they can be rushed anyway.

I did put her toe caps back on for another 10 minutes or so while we were waiting around, but as it came to 1.30pm some of the girls seemed to be disappearing. Thinking they were heading to the stage area I took off Lucia’s toe caps and popped on her tighter ballet shoe – once again to ensure she was ready along with everyone else. In hindsight, I did this too early as well.

The three ballet shoes

FYI – Lucia has 3 ballet shoes – one for her left foot (size 10) and two for her right foot (size 11). She has two for her right foot because when she is wearing her compression garments and toe caps she needs a shoe with looser elastic to accommodate the compression as well as her swelling. I customised a ballet shoe with new elastic to fit. Then she has a ballet shoe with the normal, unadjusted elastic, just for festival performances, as when she has no compression on the adjusted elastic is too loose. (Hope this makes sense.)

Adjusted ballet shoe elastic

However, the ‘normal’ elastic really is too tight for the swelling on her little foot (we need something in between the two) and on Saturday she had it on for about an hour or slightly more all in. When she had finished dancing and received her medal, I took her ballet shoe off and the swelling on her foot was in the exact shape of the ballet shoe where it had been digging into her. It wasn’t sore thankfully but it looked like it was.

The mistake

And then I made the biggest error of all. We were back in the tiny changing area and getting compression on when I am at home, with plenty of room and lots of time is tough enough never mind in a confined space surrounded by other people.

I had brought a regular pair of tights with me so I put them on under her leggings just to get us out. In my head I had planned to put her compression back on when we got to the car – but I didn’t. I thought, it’ll be ok.

So off we went for a lovely family meal and although it was in the back of my head I didn’t really worry too much. I think we were just too hyped up after the amazing performance and enjoying precious time with family.

We then had cousins coming for a sleep over that night so once again there wasn’t really time to think about it at home. When I took off her regular tights I could see her swelling wasn’t great, but she was having so much fun I just let her be.

Consequnces

Yesterday morning however told a tale. Her little foot was so very swollen and full of fluid. It looked so tight – like it might burst – and had a ‘mottled’ sort of pattern on the top of it. Her ankle was swollen and her leg too, more than normal. So obviously my worries kicked in a little.

A long day with little compression had clearly taken its toll. And then possibly just the events of day including her adrenalin running for the performance, not drinking enough throughout the day, not eating the best and staying up later than normal meant her little body was struggling to cope and she was really very inflamed. Does this sound right? Or am I just making it up to try and explain things?

Recovery

So yesterday was a Netflix day. Lucia pretty much sat on the sofa with her legs elevated all day. I got her garments on early and got her legs up. I did some extra treatment with the Physio Touch machine as well to try and bring the swelling down a bit and made her drink lots of water.

This morning (Monday) her foot and ankle were still not in great shape – though to be honest, over the last few weeks I do believe her swelling has been worse than normal, but I suppose this weekend didn’t help.

Emotions

As you can imagine I have been feeling anxious and annoyed at myself for slipping up a bit – it was a stupid decision and it has been playing on my mind a fair bit. But I am trying not to let my head run away with this too much. Once upon a time I would have really given myself a hard time until I nearly made myself sick, but I am learning to control this a little bit better. Yes, I am really frustrated at myself for not just taking the time to put her garments back on in the first place – it was foolish and I really regret it – but I am trying to see it as a learning moment so I don’t send myself mad. Plus, it was a one-off day. And it was a day when Lucia was ecstatically happy and had the most fun which is hugely important and helps put things in perspective.

I did very quickly put measures into place to try and get things back under control again as well as chatting to Lynne for advice considering her swelling hasn’t been too good lately anyway. I just hope all our usual daily treatments and extra efforts will get us back to a better place with her swelling soon.

Everyday is a school day when it comes to Lymphoedema – and, as always, any advice is welcome.

Lucia is six! That feels strange to even write – I think I am still trying to get my head around how my baby girl is six. But she is. It was her birthday two weeks ago and she had been looking forward to it for so long (months in fact!) and she had a brilliant birthday weekend.

She had a party with her little friends in our local recreation hall where they played games for an hour followed by food and the all important birthday cake! 13 little girls (and big brother Max of course who ended up getting chased by the girls!) made for a fun/manic couple of hours and she had the best time. We also had a a few family parties and more cakes over the weekend, so it is safe to say we were all partied out!

Opening presents from Max

The birthday girl and her special cake

That all happened over a Saturday, Sunday and Monday – but the madness didn’t end here. That Tuesday brought Lucia’s very first dance festival where she would be joining her dance ‘troupe’ to perform a routine choreographed by her amazing dance teacher on stage.

The girl loves to dance!

Anyone who follows the blog will know that Lucia LOVES to dance. She has been attending ballet classes for about 18 months now and last September joined the Troupe class, which is a group of girls under eight years old who learn a routine together. They then dance at three festivals. Her class has about 20 girls in it and the way her teacher manages the class and has taught them a truly beautiful routine is beyond me! The woman has amazing talent and true patience.

You can read more about Lucia’s love of dance in these posts: this one is about her starting ballet and finding the right teacher, this post is about her first show (amazing!) and this one is just last Christmas when my heart nearly burst!

The big day

They have been practicing their routine called Treasure for months – and then suddenly the big day was here! We headed to the Town Hall where it was being held and when we got into the hustle and bustle of the changing room where everyone was getting ready it was really quite nerve wrecking!

We all arrived early so that the group could get a quick practice on stage – and, as you can imagine, this was very different to the hall they practice in. Lucia ended up completely overwhelmed and her little nerves got the better of her for a few minutes – understandably. But we had a good chat about how those feelings were completely normal, got some reassurance from a little friend and then she was raring to go again. I got her changed into her beautiful, fairy-like outfit, finalised her hair and she even had a little bit of makeup applied!

Slight modifications and Lymphoedema management

This dance is very lyrical and is done in bare legs and feet, but throughout all the practices Lucia has always worn her compression tights and ballet shoes.

When it came to the actual performance I agreed to Lucia doing it in bare legs as it is only three minutes long – but the bare feet is a complete no-no. I explained this to her teacher and the reasons why this can pose such a risk to Lucia and she completely understood. She decided to order her some new ballet shoes in a different style to what she usually wears and more skin-toned in colour, but unfortunately when we got them on the day they just didn’t fit.

They were much narrower than her own ballet shoes and had tight criss-cross elastic on the top of them, which squeezed her right foot unbearably. So, her regular shoes were worn (as previously adapted by me to fit) and off she went. (Luckily I had given them a good clean as I know when it comes to shoes that 9.9 times out of 10 they wont fit, so we always need to be prepared).

I also kept her toe caps and converse on until the very last minute before they headed for the stage and put them straight back on after the performance to try and minimise the fluid build up as much as possible and keep that all important compression on.

So she headed onto the stage with the group, danced her little heart out, smiled a big smile – and they came 2nd! She was so proud of herself for doing it and she honestly just loved it. We were so proud of her for conquering those nerves that had her saying ‘I don’t want to do it’ at one point, to then going on full of confidence.

Thankful and proud!

I am so thankful and grateful to have found a ballet teacher who is understanding and allows these little modifications to happen. Who understands Lucia’s physical well-being is of paramount importance and accepts that she has to do things a little differently. And as mentioned before – Lucia’s first love is dancing. At just six years old it is the thing that makes her most happy and when she isn’t in class she is dancing around the living room or just wearing her ballet shoes because she wants to. Her teacher is a huge part of the reason as to why she loves it so much.

So this is just another way that she is showing Lymphoedema who is boss – and not even realising it. She has no concept that this condition could hold her back in anyway – and long may that last! She isn’t letting it dictate who she is. She is doing what she wants to do, the way she wants to do it, and, as always, doing it amazingly.

So this week has been half term holidays for Max and Lucia and they have been lucky enough to have a whole week off school. After being spoilt by their grandparents for a couple of days I finished up at work and have enjoyed the rest of the week with them (unfortunately Daryn had to work) – and it’s been wonderful not having to set alarms, have no routine and to just do what we want.

The kids really only wanted to do two things – go to the toy shop as their Christmas vouchers were burning a hole in their pockets, and to go swimming. The rest of the time they wanted to spend at home in pjs, playing board games and chilling out together – my favourite things to do!

However, these plans had a slight adaptation when Lucia suddenly mentioned she hadn’t had her ‘pass the parcel’ (her bandages) on for a long time. This was on Tuesday night. I asked her if she would like to give them another go and she said ‘maybe’. So on Wednesday morning I sent Lynne (Lucia’s therapist) a message on the off chance she could squeeze her into clinic that day to wrap her up. And she could!

So after a visit to the toy shop where they both had loads of fun picking out new toys, we headed to the Lymphoedema clinic. Lucia sat up in the big chair and chatted and chatted and chatted before telling Lynne she had decided to have her pass the parcel put on again. What a big girl! She just asked her to be careful of her baby toe as it got a little bit sore and very itchy the last time before letting Lynne wrap her up – and even trying to help her out at one stage.

We then headed home for the next 48 hours – and she handled it so well. She was comfortable, happy and rarely mentioned the bandages at all.

What we did notice again though was her tiredness levels – like she is only working on half her battery power. It’s can be so easy to forget what is going on under the bandages. It’s not like she just has a big plaster on. The bandages are squeezing the fluid away from her foot and leg (much more than her everyday compression tights) and her body then has to process this fluid and get rid of it – and when her body/organs aren’t used to doing this, it is really very tough on her. (This post gives a little more insight)

She slept a full 12 hours on Wednesday night and on Thursday we had a much needed PJ day. We got out a load of games to play and after some trumps, dominoes and monopoly Lucia was suddenly exhausted. It was like her little brain just started to shut down and all she wanted was cuddles. So the three of us got on the sofa to watch a film for the afternoon and it was pure bliss.

She also didn’t have much of an appetite all day so she just snacked here and there when she felt like it. This was the same as last time.

And then it was Friday – time to get them off!

Waiting room face pulling!

Results again were fabulous – her little leg and foot felt amazing. We could feel her shin bones and ankle bones, the top of her foot and could even see a vein that we normally can’t see. (All sounds so trivial but to us this is huge!) It is amazing to see that so much of the fluid can be moved out of her leg and foot – but unfortunately we know it soon fills back in again.

Lucia was also due to get measured for new garments so Lynne did this when the bandages came off and the idea will be to try and get her bandaged again for a couple of days when the new garments arrive for optimum fit. We did this last summer and her garments definitely fitted much better and snugger and I think did a better job on her wee legs and feet.

This round of bandaging came completely out of the blue and we were so grateful to Lynne for squeezing us in and accommodating us when Lucia felt ok about the process. These experiences need to be as positive as possible, so when she was volunteering to get the bandages on we took the opportunity and ran with it.

Then, once the measurements were finished we all headed for the swimming pool as both Max and Lucia love it! And of course – it’s super therapy for Lymphoedema! It was a great end to a lovely few days together – would it be bad to say we are counting down to Easter?!

Following on from my last post I just thought I’d do an update on how we got on and what happened. It was long and tiring as well as exciting and interesting and, as expected, our little lady was simply amazing.

But before I start I just wanted to say a big thank you to everyone who took the time to either comment on my last post or to email me to wish Lucia luck and to share your experiences. It means so so much to us to have support and encouragement from you all as we continue to find our way through this condition.

Here we go

We arrived at the hospital about 9am and met up with Lucia’s therapist, Lynne, and headed down to the Radiology Department. We had told Lucia she was going to get special photos taken of the inside of her legs – a bit like an X-ray – but hadn’t mentioned the injections at this point.

The radiologists were brilliant with her. So friendly and kind and chatted to her as well as to us which we appreciated. They explained the procedure to us, including the injections between the toes – and as you can imagine, Lucia’s little smile turned to fear. But they were very quick to reassure her that they would be putting lots of magic numbing cream between her toes as well as some freeze spray so she wouldn’t feel anything.

So on went the magic cream and we went back out to sit in the waiting room for half an hour for it to take effect. She sat up on Daryn’s knee with a little table and we gave her the brand new colouring book and pens we had got especially for the day and she happily coloured in without mentioning the injections at all.

The toughest part

Then we were called into the room where she was to lie down on the bed for the injections. They had a tv all set up and a choice of DVDs – Peppa Pig made the cut so she lay down to watch a few episodes while we got the worst bit of the day over. And she was amazing. She lay like a little darling while I held her hand and chatted to her to try and stop her looking at the needles. She knew they were coming but she lay still and let the radiologists do what they had to do.

This part was tough. One had to hold her toes apart while the other injected the dye. She whimpered and cried a little when it went in on each foot while I held her tight and Daryn tried to distract her. And then it was over.

Amazing inner strength

Lucia has an amazing inner strength. The courage and resilience she showed on this day had our hearts fit to burst. She has such a strong, fighting spirit that she draws on at times like this – and everyday living with Lymphoedema – all without even knowing it. We say so often she takes everything in her stride – but she can only do this because of that strength and the positive attitude she carries within her.

(Max has this too. He has been through 5 broken bones in 2 years and the way he got through each injury was simply incredible too. The bravery, the patience and the resilience he showed and continues to show each day makes us so very proud.)

Walking, running, dancing, scanning and repeat

Once the injections were over we felt like we were flying! We could see two ‘magic sparkles’ on the screen – one on each foot – and we were then sent off to take Lucia for a half an hour wander around the hospital. This was to try and get the dye to travel through her lymphatics before the next scan.

So we walked up and down 110 stairs, danced, skipped and ran up and down quiet corridors, got a bit lost, grabbed a cup of tea and a pain au chocolate before heading back to get scanned.

Lucia was then made comfy on the bed with peppa pig in full view, while the scanner was lowered down until it was merely centimetres away from her body. She had to lie still for about 20 minutes as the bed very slowly inched its way out from beneath the scanner which was taking constant photos of her.

She was as good as gold – had a few wriggles! – but otherwise lay cuddling her little kitty and watching peppa pig. While she was being scanned I almost felt like I was holding my breath waiting to see or hear what was showing up on screen. Turned out, not much was happening. The dye didn’t seem to have moved anywhere on either leg so we were once again sent off to try and get this moving.

Another half an hour of walking, running, dancing, skipping and stair climbing until Lucia’s little legs couldn’t take anymore and she was back up under the scanner. This time the radiologist said they could see the dye had moved up through the lymphatics of her left leg but the right hadn’t budged.

So this time we were sent away for an hour – and you can imagine how tired Lucia was by the end of it. She did about 12,000 steps overall and boy were her legs feeling it.

Our hospital travels!

Back under the scanner for some final photos but again, things on the right still didn’t seem to have moved. However, this was just a ‘first glance’ at the scans by the radiologist. We know that a lot of filtering and interpretation has to be done to read the scans so in a few weeks we hope to have a better idea of what is going on. Obviously we know her right side – which is most affected – isn’t working well but we really hope that these results will maybe give us a bit more info on why.

And then it was over…

We left the hospital after 2pm and Lucia requested a stop off at a coffee shop for a special hot chocolate and a croissant – which we were more than happy to do! We then headed home to get her some rest and a lovely bubble bath to ensure the injection sites on her toes were nice and clean. I also put some savlon antiseptic cream on too as a precaution, but thankfully there has been no redness or issues.

She was asleep by 7pm and slept a full 12 hours that night. (I wasn’t too far behind her since I had very little sleep the two nights beforehand.) Her school and teacher were fantastic as always and suggested I lift her early from school for the rest of the week to let her fully recover and get over her big day.

So now we wait and hope that in a few weeks we might have a little bit more of an insight into this condition and exactly how it affects Lucia – so watch this space.

So tomorrow is a very exciting/nerve-wrecking day for us. Lucia is getting a Lymphoscintigram carried out. This means we will finally be able to begin to understand what exactly is going on inside her little body. It’s a procedure we had read about when she was just a baby and had always been keen to get done, however, we had been told that she wouldn’t be able to have it until she was around seven or eight years of age.

But here we are – she is only five – and we are booked in to get it done tomorrow in our local hospital. When the letter arrived we were really shocked and surprised as it just hasn’t been on our radar at all. I actually re-read it a few times to make sure I was reading it right as we always thought we would have to travel to London to get it done.

We have had quite a bit of activity around the genetics side of things over the last few months (a whole other post of its own!) and this procedure is being carried out on the back of the results that we have received lately. Lucia’s Consultant Geneticist ordered the test, as what we find out through the Lymphoscintigram will be another piece added to the puzzle that we have been trying to figure out for the last five years.

So what is a Lymphoscintigram?

For those who may not know, this is an examination in which pictures of the lymphatic drainage of the limbs will be taken by a Gamma Camera after a small radioactive injection. The radioactive bit sounds a bit scary doesn’t it! Basically, Lucia will be injected between her toes with a radioactive tracer which will show up her lymphatic vessels so we can see how the drainage of her lymphatic system is working – or in her case, not working. It will take a few hours all in all and will involve a bit of sitting about and a bit of walking about.

Excitement v Fear

We are really excited to be getting it done. To finally be able to take a look inside our girl’s lymphatic system and hopefully see what we are dealing with and how we might use this information to help her. I’ve said before in previous posts that knowledge is power – so I hope this will give us more power.

When it sank in that this was happening I also started to get a little bit scared as well – which I think is completely natural as a mummy. But I am working hard at managing the fear and thinking of the positives that the information will hopefully bring. It was Max’s 9th birthday last week as well so with a weekend of birthday parties to organise I haven’t really had time to think about it all – until now.

I think my main fears are about the actual procedure itself. First of all they have to inject the dye in between the big toe and second toe of each of her little feet. That alone has me freaking out a bit. How sore would it be? Would she sit still to get it done? What happens if they inject and she pulls her foot away and the needle cuts her toes? What is the risk of infection? We are always told she cannot have any needles, injections etc put into her feet or legs because of the risk of infection yet here we are doing just that. But I have to be confident that the doctor doing the test will be vigilant and everything will be carried out to a tee.

How will she feel when the dye goes in? Will it feel strange? Will she feel nothing at all? And then after the test – how will it affect her? How much will it take out of her physically and emotionally? In a recent post (here) I have written about how her body reacts and ‘crashes’ when something big happens, so that is also playing on my mind a bit.

I have spoken to Lucia’s therapist about all of this of course and she will also attend the appointment with us which is very reassuring – for us and for Lucia. I know there will be a freeze spray for her toes to hopefully ensure she feels very little pain and we will use lots of distraction techniques so she doesn’t have to see any needles. I have spoken to her teacher to let her know she will be missing school and, if need be, will also have a recovery day. She actually suggested sending her home early for the rest of the week if she needs it which I was really appreciative of.

A new chapter

But aside from my overactive mind, my overarching feeling is of excitement as this is a huge step in our journey. This feels like the beginning of a completely new chapter in our lives, when we will finally start to understand what is actually going on with Lucia’s lymphatics. When we discover what has or hasn’t formed properly. What is there or what isn’t there. Is she missing vessels? Or nodes? Or both? And where exactly?

The results will tell us so much and hopefully open up so many more doors for us. Whether it be tailoring her daily therapy to better suit her or looking into the possibility of micro-surgery in the future – who knows? But we will finally have some more answers that we have wanted and needed for years. We know there are other tests and procedures that can also be carried out that might even look more in-depth, but this is a fantastic starting point.

So wish us luck – I barely slept last night and when I did my dreams were very strange so I’m pretty sure tonight will be the same. I have packed a bag of snacks and drinks, toys and books and plenty of cuddles from mummy and daddy! But, knowing Lucia, who always manages to take everything in her stride, she will no doubt handle it all superbly. And we will be there to hold her hand every step of the way.

I had the majority of another post written but after this morning I am bumping it for this one instead. It was one of those mornings where my heart was so full of pride, some may have escaped from my eyes!

It was Lucia’s last ballet class before Christmas and they had all been practising their moves over the last few weeks to show the mummys and daddys, brothers and sisters, grandparents and anyone else who wanted to come along. And I don’t think I was quite prepared for what we were going to see.

Our pre-ballet routine is the same every Saturday – Lucia gets her toe caps put onto her right foot as soon as she gets up along with her converse to try and reduce the swelling in her little foot to make her ballet shoe more comfortable and a better fit. After breakfast she also has some elevation before we get her compression on under her ballet gear. Then off we go!

When we arrived today, Lucia, along with the other girls in her class, disappeared into a little room off the hall where they practice and got their nails painted, a little bit of sparkle on their cheeks and a dash of red on their lips.

Then out they came with Lucia leading her little group, skipping around the hall with high knees and pointed toes looking like the most beautiful little swan I had ever seen in a beautiful white leotard and tutu covered in sequins. Before she even came out I could feel the tears pricking the backs of my eyes but when I saw her I had to really focus on holding myself together.

Watching her plie, pointing her toes, jumping and skipping – all while she beamed with happiness and confidence – just took my breath away. She loves to dance, simply adores it whether in class or at home, it is just part of her. And when I think back to when she was a little baby and everything felt so uncertain – whether she would be able to walk never mind dance – I feel like I have to pinch myself on days like today.

I watch her with complete awe. I watch her with the biggest smile on my face. I watch her and embrace the joy and confidence that she has and often feel completely overwhelmed by her. By my girl. My girl who we tell everyday that she can do anything she wants to do. That she can be anyone she wants to be. And then we watch her as she goes and just does it. And honestly, I can barely describe how that makes me feel as her mummy.

I say it a lot but it is like my heart could explode. That lump in my throat, the tears in my eyes, finding it hard even to breathe because my girl is out there doing what she loves most in the world. Being a five year old who loves to dance.

And as her wonderful big brother Max said afterwards – ‘Lucia was the most beautiful girl and the best’ – I’d have to agree.

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a little bit about us

Hello and welcome to Little Miss Lucia’s Lymphoedema Life blog! Lucia is my beautiful daughter, born on 12/03/12 with all ten fingers and all ten toes. However, her 10 perfect toes were puffy, as were her feet and legs. After months of tests and hospital appointments she was finally diagnosed with Primary Lymphoedema. Read More